Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundationwas created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

Random Shots of Mattie, Family and Friends

April 18, 2015

Tonight's picture was taken in April of 2004 at the Reston Zoo. To me this photo is priceless. I am not sure who was more entertaining to watch, Mattie or Peter! Peter was feeding the sheep and Mattie was behind him intrigued and glued in place watching the goats.

Quote of the day: Assertiveness is not what you do, it's who you are! ~ Shakti Gawain

Today we had our day all planned out for us. We wanted to go to the Christmas Tree Shops in Waldorf, MD to do some final shopping for our Foundation's raffle. This is a store I venture to every April with either Peter or my raffle chair, Carolyn. Yet when we got into our car, a warning light came on and we realized the car was not operational. Absolutely NOT what we needed today. The car was leaking anti-freeze and the irony is I had the same problem last year with the change of season. In any case, instead of moving on with our day, we were diverted to calling AAA and our car dealership. AAA was great, our car dealership was another story. The service rep at our dealership hung up on Peter twice and Peter was trying to get answers as to whether the dealership had a loaner car available for us to use while they serviced our car. Otherwise it made no sense for Peter to ride out with the tow truck if there was no car to pick up to return home in! In any case, I was listening to these frustrating phone calls and I realized we were not getting answers and we needed them before the tow truck arrived looking for decisions from us. So I decided to call the dealership myself and instead of talking to a service rep, I demanded to talk to a manager. Within minutes the director of customer service called me back and needless to say all my issues were taken care of instantly and a loaner car was secured, not to mention that we were reassigned to the service rep that I love, Sharon. Sharon has a dad who is battling cancer and Sharon and I just understand each other. She is very attached to her car, so she gets my own attachments. Needless to say thanks to Joe, the director of customer service and Sharon, we were able to have a productive day and move on and get our shopping done. I can officially say that we are shopped out tonight after many hours of shopping. We hit more than just the Christmas Tree Shop, but the wonderful part about Waldorf, MD, is that stores are right next to each other. So I literally can bounce from one store to the next. In fact, I had the pleasure of exploring Michael's craft store. I have always loved AC Moore, but I think Michael's may be bigger and have more of a selection. I can't believe I am saying that, since I love AC Moore.

When we were driving home this evening, we passed National Harbor with its Ferris wheel. It lights up a pretty purple at night.

We also started to see the sun setting. Which was a beautiful sight.

When we got home, Peter took me outside to see our neighborhood crabapple trees. They are glorious and SO fragrant. I guess I have passed these trees for years, but never really payed attention to them. So I am glad Peter suggested we walk to see and smell them tonight.

April 17, 2015

Friday, April 17, 2015Tonight's picture was taken in April of 2006. It was actually taken at Mattie's 4th birthday party at Riverbend Nature Center. Mattie and his friends were doing a pretend excavation of dinosaur bones in the sand. They had a wonderful time that day as the naturalist gave them a tour through the woods, introduced them to some animals up close and personal, and then did this dig. The irony of this was it took Mattie quite some time to develop an appreciation of the sand. It wasn't something he naturally gravitated to as a child. We worked on it and going to a very hands on preschool helped. Once Mattie got used to the feeling of sand, then the opposite happened..... we couldn't get him out of the sandbox! He could spend hours in it.

Quote of the day: You can't use up creativity. The more you use, the more you have. ~ Maya Angelou

I have to say I am thrilled it is Friday! It was quite the week of nonstop work. Though I will be doing raffle work this weekend, my hope is to spend some time away from the computer. At least that is my hope! In addition to Foundation work today, I had a licensure meeting which I had called to address some issues that were bothering me. Issues which I can't discuss here, but needless to say even after meeting for several hours today, they haven't been resolved. Basically from what I can reveal is my frustration over regulations. Laws are changing that want to regulate how I communicate and hold my business within the board. I have been overseeing this process for eleven years and at this point in my career, I do not do well with government coming in and micromanaging the process. Especially when I deem this management as curtailing our effectiveness and impacting the needs of those we are ultimately serving. So unfortunately my personality type being a very feeling person, I naturally emote rather than react calmly. The two lawyers today did not know what hit them but realized I meant business. I am signing off for tonight in hopes of finding more calmness and peace.

Thursday, April 16, 2015Tonight's picture was taken in April of 2004. Mattie was two years old. We took him to the Reston Zoo. What I loved about that Zoo was the fact that it is a small zoo in size, it is quite hands on, and all the animals are child friendly. You can get food there and feed the animals, which was what Peter was doing with Mattie. Peter was trying to give Mattie some food to feed the goats. As you can see Mattie was HIGHLY suspect of what Peter was holding in his hands and was inspecting it very cautiously. Mattie had several visits to this Zoo, and with each subsequent visit, Mattie grew more and more comfortable with the whole experience. Mattie loved and was fascinated by animals, which was why this Zoo was the right fit for him.

Quote of the day: If there be one thing pure, where all beside is sullied, and that can endure when all else passes away - if aught surpassing human deed or word or thought, it is a mother's love. ~ Marchioness de Spadara

I have been working and running around all day regarding the Foundation's Walk. I know it is spring and yet I am not really taking the time to look at the beautiful trees around me. I am so happy that my good friend Mary Ann sent me photos today of what she was seeing around her. The cherry trees are out in DC and they are glorious!

It isn't only the trees, the forsythia is also blooming! It is almost sunshine yellow and glowing. These photos were the highlight of my day. Mary Ann brought me virtual spring and she has reminded me that I have to stop and look more closely at what is around me tomorrow when I go out! I am so glad that these photos reminded me to do this.

April 15, 2015

Wednesday, April 15, 2015Tonight's picture was taken in April of 2004. For Mattie's birthday that year, we put up paper, puzzles, and all sorts of activities on the wall for him and his cousins to do! Mattie just loved the whole notion of coloring on the wall! So much so that I left the papers up for days so he could continue the fun. As you can see in this photo, Peter got home from work and Mattie immediately engage him at the door with a marker and wanted him to start drawing on the wall!

Quote of the day: The artist is a receptacle for emotions that come from all over the place: from the sky, from the earth, from a scrap of paper, from a passing shape, from a spider's web. ~ Pablo PicassoI had my first kindergarten class art session today at Mattie's school. It started at 8:30am. Not my hour, especially since I was up yet again working late. I have been teaching this three part art series for five years now. It is hard to believe, because it seems like just yesterday I was struggling to develop the curriculum. My experience teaching has always been with adult learners. So the notion of teaching 5 and 6 year olds was rather daunting! Yet having raised a child, helped tremendously because I knew how to gauge the attention span and understood what appealed to their curiosity. After Mattie died, Donna (another kindergarten teacher at Mattie's school) asked me to tea in her classroom. Mind you I really did not know Donna. I only knew her through my friend Junko, since Junko's son completed kindergarten in Donna's classroom. Over tea Donna mentioned that she wanted to find opportunities for me to come into her classroom. She had heard that I came into Mattie's kindergarten classroom when he was a student, and that Mattie's teacher appreciated all my efforts. Which was lovely to hear. But again, as I reminded Donna, my teaching experience was not with little ones. As Donna continued to talk she asked me my interests and I must have mentioned I loved art. One thing lead to another and she told me about the children's book by Nina Laden that she reads to her class entitled, When Pigasso met Mootisse. Clearly the book is about Picasso and Matisse and it touches upon these wonderful artists but in a farm animal sort of way. Donna had always wanted to take the next step and build upon the concepts in this book but just never had the time. That is where I came in..... five years ago to be exact.I spent months researching Picasso and Matisse. I got to know about them separately as artists as well as their competitive relationship with one another. In many ways they were jealous of each other and yet at the same time intrigued by the other. They studied one another's art very closely and in a way mimicked the other at times, as they painted similar content and scenes. Though they had drastically different styles. My goal is to make these artists come alive for the children and I find the way to do this, is to insert real life details about the artists' lives into my talk. Details that a child would find interesting and memorable. Such as..... Picasso loved to keep a messy studio. In fact, his studio was lined with garbage, dust, and even had mice in it. He preferred painting at night and in complete silence! Picasso began painting as a child and I show the children art work he painted when he was only 14. By the end of today, the children learned that Picasso was born in Spain, that he was the Father of Cubism (which wasn't well received at the time ---- painting subject matter by using shapes), painted from his imagination, and was very influenced by his emotions (as he had blue and rose periods of painting as a result of sadness from the death of a friend and happiness over falling in love). I know the children also love stories! They are used to hearing stories from books and books tell stories through words. Today, I explained to them that paintings also can tell stories! However, the stories aren't conveyed in words. Instead they are conveyed in colors, shapes, and patterns. These colors can make us feel a certain way and yet we do not always react the same way to a color. For example, I may feel one way about red and you may feel a different way about it! To illustrate my point, I took a sheet of colored paper and taped it to the back of Donna. Only the students could see the color on the paper. Donna had NO IDEA what color was taped to her back. I then asked the students to describe how the color made them FEEL! Based on their descriptions Donna then had to guess what color she was wearing. She was wearing the color red! Interestingly enough two distinct feelings were expressed by the class.... angry/mad and happy!

Then came the hands on activity. On a large piece of poster board Peter traces "Woman with a Hat" for me. This to me is a great and simple Picasso for the children to work on in teams. So picture getting a large white poster board with black lines on it and the students then have to color it in. However, they aren't shown this actual Picasso, so they literally do not know what they are coloring in. Therefore it is left up to their IMAGINATION to see shapes and colors as they so chose within the lines I give them. You will see what they came up with below.

There were four groups working on this project today. Here is one of the creations. In the five years I have been doing this, I would say this year's class was very collaborative, they used their words and checked in with each other about the joint creations they were forming as a team. Because literally there were three children working on each poster board.

We gave the children eight different paint colors to work with. This particular group found that too limiting and decided to mix paints and create their own colors.

What I always find intriguing about this is that every year children add dots, stripes, and patterns to their cubist painting. Why this interests me is because this is very Matisse like, which is the artist we cover next week. To me children naturally gravitate to the bold colors and patterns of Matisse.

The wonderful part about all of this is that the children's parents will be coming into the classroom tomorrow. What a wonderful artistic surprise they will have, because you can't miss these creations!

April 14, 2015

Tuesday, April 14, 2015 -- Mattie died 292 weeks ago today.Tonight's picture was taken in April of 2004. Mattie was two years old. Mattie absolutely loved his frog sandbox and spent many a day and sometimes evenings outside on our deck in the sand. Mattie had all sorts of things in the sandbox and as he got older he even brought pieces of wood into the box to design ramps for his cars! This sandbox now sits outside our deck space in the commons area. Since Mattie died, all the neighboring children come to play in the box. The irony is NO ONE has ever asked me whether their child can play in the box, they just help themselves. I remember the first time I saw children playing in Mattie's box, I was mortified. I have gotten used to the sights and sounds now. On occasion, parents wave to me from my window, since I can see them while I work from my desk through Mattie's bedroom window. Some days I am fine with the sight and of course some days it is bittersweet.

Quote of the day: Determine never to be idle. No person will have occasion to complain of the want of time, who never loses any. It is wonderful how much may be done, if we are always doing. ~Thomas Jefferson

Today was another extremely long day, in which I find I am suffering from migraines and probably shouldn't even be on the computer. I started the day reconnecting with a former student of mine. She has been living in San Francisco for the past five years, and returned to DC for a visit. Tess has decided to go to nursing school and wanted to share with me her thoughts on this decision. Tess got to know Mattie during his battle and also interacted with him during the first Walk that he attended in 2009. I find it quite ironic that two of my students who were avid blog readers during Mattie's cancer journey have now chosen to become nurses!

Later today I went to Mattie's school. For the next three weeks, in addition to balancing the Foundation's walk preparations, I will teaching my three part art series within one of the kindergarten classes. Donna told me today that I have been doing this for five years. Somehow it doesn't seem that long! When I went to School today to set up for tomorrow's lesson, I passed Mattie's tree! The daffodil bulbs we planted around the tree in the Fall are in full bloom and are delightful!

Donna, the wonderful kindergarten teacher I have had the pleasure of working with and getting to know over these years, surprised me with this beautiful hand decorated flower pot today. This was a gift her students from last year created for me. These are hand painted butterflies on the outside of the flower pot!

On the inside of the flower pot, it says "thank you!" The children wanted me to know that I was appreciated and they enjoyed my visits last year. It was a very special gift to receive today!

April 13, 2015

Monday, April 13, 2015Tonight's picture was taken on April 17 of 2004. Mattie was two years old. That day we took him to the National Zoo and Mattie and I were having a moment together. We did not even know that Peter was capturing us on camera. It was just a natural interchange between us.

Quote of the day: You cannot do a kindness too soon, for you never know how soon it will be too late. ~ Ralph Waldo Emerson

I have been working the entire day away in front of the computer trying desperately to catch up on the Foundation's Walk activities! Being gone a week has set me back a bit. I had a lot of digging out today and literally I did not move for about 12 hours. I am wiped out and even wrote an April newsletter, but I am happy to report the following news. This is the first year that the Foundation has six corporate sponsors for the Walk. In total, these sponsors have contributed to the Foundation over $13,500! It is a remarkable achievement for us. I am deeply grateful to each and every sponsor and our most recent sponsor, which we secured today, is Inovalon! I want to thank Kristen, who is a loyal blog reader for helping us target this wonderful lead. I am deeply grateful! Here is a listing of our wonderful Sponsors for this year's Walk:Mattie Miracle Level SponsorIBC, a DBS CompanyPlatinum Level SponsorsECSInovalonMedStar Georgetown University HospitalSilver Level SponsorsKearney and CompanyOstendio

April 12, 2015

Sunday, April 12, 2015Tonight's picture was taken on April 12 of 2002, 13 years ago today. On my dad's birthday. Mattie and my Dad both had April birthdays. In 2002, right after Mattie was born, I remained in the hospital for about five or so days afterward. So literally we came back home just in time for my Dad's birthday. This was a peaceful moment that we captured Mattie to take a photo, but with Mattie the key was movement and fresh air right from the beginning to keep him happy. I remember many days and nights walking outside in our commons area. It was where Mattie was happiest. Quote of the day: Spring is the time of plans and projects. ~ Leo Tolstoy

I wasn't sure what to focus upon first today. The massive amounts of email that has piled up, issues related to the Foundation's Walk, or the transition that we need to make into Spring. Which involved clothes and everything in our home. It was a tough winter and it shows on our deck and in our flower pots and bays. It will take me weeks to clean up this mess. But I started the process. As you can see our daffodils are all a bloom by Mattie's memorial garden in our commons space.

Last year, someone gave me a hyacinth plant. I love hyacinths and instead of tossing it out after it died, Peter planted the bulbs for me! It came back this spring!

Our row of daffodils! In between computer work and other projects, I also took on cleaning our big living room picture windows which were a total mess. But once you start one project, it seems like more seems to just pile on.

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Mattie Passed Away

With heavy hearts, Peter and I said goodbye to our precious Mattie when he died on September 8, 2009 at 7:15am. He fought death for five hours, but after being given propofol, he finally fell into a deep sleep. My hunch is he did not want to say good-bye to Peter and I, and it took massive amounts of drugs to end his suffering.

Mattie in Summary

Diagnosis timetable: July 23, 2008 - tumor in the right humerus; August 1, 2008 - tumor in the left humerus; August 6, 2008 - tumors in the right femur and left radius. On August 6, Mattie was officially diagnosed with Multifocal Synchronous Osteosarcoma.Tumor Resection and Limb salvage surgeries (repiphysis): on October 20, 2008 and November 12, 2008.Percentage of Necrosis: 60% in right humerus; 80% in left humerus; 100% in left radius; 2% in right femur.Chemo began on August 8, 2008: High Dose Methotrexate, Cisplatin, Doxorubicin; Ifosfamide, and Etoposide were added to the treatment protocol on December 1, 2008; MTP-PE was added to the treatment protocol on January 12, 2009.Chest CT scans post surgery:December 5, 2008 – four 3mm lung lesions; January 8, 2009 – CT scans reveal no change in the lung lesions; March 19, 2009 - CT scans reveal slight changes in two of the lesions. With potential increases in size of up to 1-2 mm per lesion. On June 5, 2009, CT scans at 1.5mm cuts (so very refined cuts) revealed that Mattie's lung lesions doubled in size since January. The four lesions are now 8-9mm in size, indicating that Chemotherapy is not working.Median Sternotomy: June 15th, 2009, removed 9 lesions, four in the left lung and five in the right lung. We do know that two of the lesions had calcified indicating bone material was present. This confirms that the bone cancer has metastasized to the lungs and that Mattie's chemotherapy was not effective at fighting the cancer in his lungs.PET Scan: There appears to be a possible variant (i.e something abnormal) in the lower left femur, but as of now it is too small to determine what it really is. Normally, one would biopsy this, but the location is difficult as it involves the growth plate, and with lung surgery imminent, and Mattie just being off of chemo, the advice we're getting is to wait and watch, and to see what it looks like during the next scan.Echocardiogram: Mattie has a reduced LVEF (Left Ventricle Ejection Fraction), which in layman terms means that his heart is not pumping with its normal level of pressure. Although it is not at a dangerous level, the doctors do want to monitor it with a follow-up echo in a few months to determine if this is a temporary impairment or if long term damage has been done.

Washington Post Article on The Mattie Miracle Cancer Foundation!!

An article on Vicki and Pete and the Mattie Miracle Cancer Foundation ran on July 24, 2010, in the Washington Post's Metro section.

Many thanks to Post Reporter Rick Rojas, for doing a great story on us! To read the article on the Post's website, click HERE

Washington Post Article on Reach the Day and Mattie's Blog

In the July 2nd, 2009 edition of the Washington Post, our story and our blog were briefly mentioned in an article regarding CureSearch's Reach The Day event, held June 22-23, 2009 on Capitol Hill.

Click HERE for a link to read the article on the Washington Post's web site.

H.R. 2109: CHILDHOOD CANCER SURVIVORSHIP RESEACH AND QUALITY OF LIFE ACT OF 2009

This video highlights some advocacy efforts to provide more effective drugs for childhood cancer patients and access to better care for survivors. This link also provides information on how to contact your representatives to urge them to support this bill.http://www.youtube.com/watch?v=fQY8vxO_quU

Mattie's Channel 9 Story

To watch the YouTube version of Mattie's video, click Mattie's News Story
or
to Read the actual story on the 9NewsNow site, click HERE

Mattie's Situation

Mattie Had Bone CancerMattie had a bone cancer called Osteosarcoma. The diagnosis was: multi-focal, synchronous osteosarcoma. He had four tumors in his extremities: the upper portions of the right and left Humerus, which is the bone that connects the shoulder to the two lower arm bones (the radius and ulna), the lower (distal) left radius (right near the wrist) and the lower (distal) right femur (just above the knee joint). Although commonly found in adults, this type of bone cancer is very, very rare when found in six year old children. Mattie started chemotherapy on Thursday, August 7, 2008, consisting of several five week cycles containing five types of drugs (Doxorubicin, Cisplatin, high dose Methotrexate, Ifosfamide and Etopicide). After the second cycle Mattie underwent a surgery (Oct. 20) to remove the tumor in his right humerus, and then a second surgery (Nov. 12) to remove the other three tumors. Mattie had three prostheses (both arms and the leg) that use the Repiphysis technology. We also tried an experimental drug called L-MTP-PE in the effort to give Mattie the best fighting chance of survival. It's a shame it wasn't enough.

All of our Family and Friends have done so many wonderful and amazing things for us to help Mattie. For that we are forever grateful. We want you all to know that we cannot thank you enough for these things and your selfless acts of kindness. We cannot adequately express how much your love, caring and devoted attention to Mattie meant to us. God Bless each and every one of you.

We made a deal from the beginning with Mattie to never lie to him about his situation, and we talked him through each step of the way. Mattie knew he had "some bad bugs" in some of his bones, and he knew that the drugs he was given were to kill the bugs, and the surgeries were meant to remove the bugs from his body. Mattie even requested from Dr. Bob Henshaw (who performed the surgery) "to let me keep a bone" once the procedures were over. Mattie did get several pictures of the procedures which he always thought were really neat.

This kind of statement only furthered our immense respect and astonishment that we had for Mattie and his emotional intellect, intelligence, and maturity. It was amazing that a six year-old could so quickly rationalize and embrace a situation and keep such a strong and positive attitude going, when his parents were a pair of emotional and physical trainwrecks. The irony is that Mattie gave us our strength to go on at a time when we should have been giving him his strength to fight.

Mattie's life during the 13 months of fighting cancer was not a normal one, even though we did whatever was humanly possible to make it as normal as possible. Fortunately, we have good friends who helped us get to the right doctors and to the program at the Lombardi Center in what everyone says was record-breaking time, who embraced us and helped us with what was unquestionably the greatest challenge of our lives. Of course, without our family and good friends, life would be a whole lot tougher than it is right now, so for those of you who are reading this, all we can say is Thank You and We Love You. God Bless.